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The European Cancer Patient's Bill of Rights

Launch of The European Cancer Patient's Bill of Rights in the European Parliament in Strasbourg on World Cancer Day, February 4th 2014.

The European Cancer Patient's Bill of Rights is the result of two years of work by  the European Cancer Concord (ECC), an equal partnership between European oncology leaders and patients and their representatives  who have come together to address the significant disparities that exist for European cancer patients. ECC is a patient-centered initiative, born out of the need to deliver an optimal standard of cancer care and research for Europe's citizens.  Strengthening and upholding the rights of the individual cancer patient/cancer survivor are the guiding principles of this initiative.

ECC is dedicated to improving European cancer outcomes by seeking to enhance the patient's entire cancer journey, from prevention to early diagnosis, treatment, care, rehabilitation, patient survivorship and end of life care.  It involves oncology and patient advocacy leaders from 17 European countries, who have come together in a unique partnership to address the inequalities in cancer care and research and to help develop effective solutions for European citizens and societies. To date, over 20 pan-European cancer Patient Advocacy Organizations (PAO), representing over 1,000 national organizations and many millions of cancer patients and survivors in Europe have become active partners...

Three key principles underpin the Bill of Rights – the right of every European citizen to receive accurate information and be involved in their own care; the right of every European citizen to access specialized cancer care underpinned by research and innovation and the right of every European citizen to cost effective health systems that ensure optimal cancer outcomes.

Significant differences in cancer incidences and mortalities are evident within Europe, reflecting inequalities in access to optimal cancer care between different national cancer healthcare systems.  However, we recognize that improving access to optimal cancer care must be achieved within affordable economic models. The economic burden of cancer is now approaching €1000 billion worldwide, making it the Number 1 disease in terms of financial drain on our global economy.

An overarching philosophy of ECC and the European Cancer Patient's Bill of Rights is that it must be delivered within the financial realism that European society is currently experiencing. The Tallinn Charter of 2008, when EU health ministers pledged to invest in improving European healthcare systems, is a distant memory. But the justification for this unprecedented commitment should not be forgotten, fuelled as it was by the cogent argument that investment is not only a harbinger of better health, but is also a driver of economic growth, achieved through higher work force participation, increased innovation and greater productivity, in a system that also reduces the pressure on future health and social welfare systems. ECC and the European Cancer Patient's Bill of Rights also espouses this "Wealth is Health" philosophy, emphasizing how appropriate resourcing of innovative approaches in prevention, treatment and rehabilitation can not only reduce the cancer burden, but also contribute to the re-invigoration of European economies and societies.

Engagement and promulgation is a crucial part of our strategy, both at pan European level and through national dialogue. This has involved interaction with the European Cancer Organisation (ECCO), through its Patient Advocacy Committee and with the European Cancer Patient Coalition (ECPC) and the European Cancer Leagues (ECL), two of the largest pan European patient advocacy organisations. Engagement with national cancer societies and national Departments of Health or their equivalents are helping to embed the initiative at local Member State level. Launching the Bill of Rights (translated into different European languages to maximize engagement and a national sense of "ownership") at the European Parliament on World Cancer Day represents a clear indication of our will (i) to focus attention on the unequal nature of cancer care in Europe, (ii) to engage and influence our political representatives and (iii) most crucially to empower every European citizen to use the Bill of Rights as a catalyst to achieve effective change in cancer care delivery in their own country/region.

The principles of equity and partnership that characterize this initiative underpin a philosophy that is straightforward in its simplicity but far reaching in its potential influence. In 2012, three European citizens died every minute from this killer disease. The exponential ageing of the European population means that this number will double in the next 20-25 years, resulting in a cancer death every 10 seconds. We need to act now. The equal partnership between patients and health care professionals, which ECC is creating and nurturing, provides a springboard for the change required to deliver improved outcomes for European citizens and societies. This partnership will encourage and attract multi-stakeholder engagement. Patients, patient advocacy organisations and healthcare professionals are the joint foundation stone of this initiative, but we are also reaching out to families of those with cancer, patient carers, cancer registries, cancer charities, learned societies, industry, governmental agencies, politicians and policy makers, the European Commission, health care payers, health technology assessment agencies and other key stakeholders.

One in three people die of this deadly disease. Cancer knows no boundaries, affecting all sectors of society.  Thus, despite our individual constituencies, we must compete, not with each other, but against our common enemy… Cancer.

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Translations

English | French | German | Greek | Italian | Polish | Romanian | Slovenian

Videos

Overview: The European Cancer Patient's Bill of Rights, Prof. Mark Lawler on behalf of the European Cancer Concord (15:55)


Northern Ireland: Queen's University Belfast's world renowned cancer specialist, Professor Patrick Johnston, whose work has transformed cancer care in Northern Ireland, is now leading efforts to improve survival rates across Europe. (1:14)


Articles

The Lancet Oncology
The Oncologist

Speeches

Commissioner Tonio Borg delivers a speech at the launch of the European Cancer Patients' Bill of Rights in Strasbourg on 2014-02-04

Speech by Alin Petrarche, ECPC ambassador and Head of the Romanian Rugby Federation

Presentations

Research and Cancer care; twin collaborators against our common enemy - Francoise Meunier, Director General EORTC

Moving forward in partnership: Developing a roadmap to promulgate and implement the European Cancer Patient's Bill of Rights - Mark Lawler, ECC Project Lead and Queen's University Belfast, and Francesco de Lorenzo, President, European Cancer Patient Coalition

Cancer and the European Citizen – it's time to deliver! - Francesco De Lorenzo, President, European Cancer Patient Coalition

Lets put the Patient First! The European Cancer Patient's Bill of Rights: A Catalyst for Change - Mark Lawler, ECC Project Lead and Queen's University Belfast, and Francesco de Lorenzo, President, European Cancer Patient Coalition

The European Cancer Patient's Bill of Rights: A Catalyst for Change! - Patrick Johnston, Co-Chair, European Cancer Concord and Queen's University Belfast, and Ian Banks President, European Men's Health Forum, Chair, European CanCer Organisation (ECCO) Patient Advocacy Committee

Addressing the unequal nature of cancer: patient rights take centre stage - Jan Geissler, Director, European Patients' Academy (EUPATI); Founder, CML Advocates Network / LeukaNET / Leukemia Patient Advocates Foundation